Apply to Join
Jul 10, 2019

April - June

 Dear friends! We're happy to share our news for the last three months.

Since April, the Fund started helping another Moscow institution: the Palliative Care Unit of the City Clinical Hospital no.15, located in Vykhino.

The unit takes up two floors. 20 adult patients share five rooms.

Now it has a Fund coordinator: Svetlana is a microbiologist and an artist who will have to take a blank canvas and create an atmosphere of home in this hospital unit. It's not just about small details that make life more comfortable — ficus plants, coffee, blankets, and napkins—it's also about relationships with medical staff and patients.

The patients here were not at all used to playing bingo, going outside for walks, or saying what they want. But we are slowly getting them used to the fact that palliative care unit can be cozy, that it can have people who care, that you can be yourself and do what makes you happy even among the bleak walls of a government facility.

 Sveta tells us:

 “Yesterday I went over to Zoya and offered her to watch a movie on a tablet. She was surprised... “I'd like to,” she said.

I turned on “Belye Rosy” (“White Dew”). I love this film too, so I sat down and started watching it with her, completely entranced :) Suddenly, Zoya turned around and looked at me in a somewhat militant way: “I want some sausage!” I exhaled. “Just a moment, I'll get you some,” I said.

 - What kind of sausage would you like?

- Wait, I can have some?..

- We'll ask, no problem!

 I brought her some sausage and helped Zoya sit up more comfortably. We got to talking (as you know, eating sausage inspires small talk).

And then Lenochka said: “I'd like a summer fruit salad... a real summer one!”

 Oh, and Marina watched “Afonya”.

Marina is a beauty, and she is so clever; she listens attentively while I read her “The Book of Culinary Stories”, loves music, thanks me. I have yet to see her without a smile on her face. I always look at her and think that she smiles with her whole internal, giant sun, and there is no bigger smile in the world... But as it turns out, there is— after seeing “Afonya”! :)”

 

In one of the rooms of the Center for Palliative Care (CPC), in the evening, patient Vlasta is reading “War and Peace” out loud to her roommate Olya.

Vlasta came to CPC in July last year, and the doctor's prognosis was discouraging. It's been almost a year since, and Vlasta still has the fourth volume to read.

Olya and Vlasta met at the Center for Palliative Care and became friends; both are our patients. They've spent many days together, sharing the same hospital room. They've been talking a lot and supporting each other. Vlasta has been taking care of Olya, and Olya has been supporting Vlasta spiritually and psychologically.

They have been reading “War and Peace” together, attending events organized by volunteers together, and once decided together that Olya's poems shouldn't be written “for the drawer”, that they can help some people who are having a hard time, who are in despair, who really need some support. Thanks to the volunteers and donors of the VERA Fund, it became possible.

For months, every evening, Vlasta and Olya were reading, choosing, discussing. This was a focused, meticulous effort of two friends, two patients, two young women who found a purpose and a goal, who found each other, who had a mission. Later, they discussed the title, design, color, and artwork. And then they waited for the collection of poems to be released. In discussions, Olya often said:

“Let Vlasta decide. This is for her. It's all for her.”

And Vlasta used to say:

“I didn't appreciate life before. I never thought that I could be loved. And only here, in CPC, I met so many good people who grew to love me!”

Finally, the book was released. By then, Olya was discharged. The Fund’s volunteers and staff, together with Vlasta, came to visit Olya and were given a warm welcome at her home. Together with Olya and her parents, they drank champagne, had tea and cake, and celebrated the fact that there are so many good and caring people in the world who can move mountains, get the moon and the stars—achieve something that seems impossible.

Olya and Vlasta gave two copies of the book to CPC and each of the hospices so that anyone facing hard times could take this book, see the Light, and feel the Love!

 

At the Tsatitsino hospice there is also a patient who is in love with literature, who recently told our coordinator Katya about her dream coming true:

“You know, Katyusha, when I found out 11 months ago that I didn't have much time left, I decided to fulfil my dream.

I thought long and hard and then realized that most of all I wanted to read all of Dickens’ books.

So, I went to the library, and they only had two editions of his collected works: one in 30 volumes, from 1957, and another one in ten volumes, from 1970s. Of course, I chose thirty volumes.

I thought that it wasn’t in the cards for me to finish it, but I did it in just three months.

Dickens is such a lively author, there are so many emotions in his work! And he is wise—he can teach you so many things. When you read everything that an author wrote during his time on this Earth, it's as if he becomes your friend. Can you imagine: it turns out that it's so easy to find a friend...”

 

All these stories happen in hospice care thanks to the help of volunteers and donors.

Thank you for your trust and support!

  

Our foundation has been spending the average of 118876$ to cover for the following needs of Moscow hospices:

01.04.19 through 30.06.19

Meals – $2074

Equipment consumables – $5243

Coordinators’ work – $103510

Other expenses - $8049

 

*We thank Veronica Demichelis for her generous help with rendering this text from Russian into English.

Jul 8, 2019

April - June

Over the past three months we made a lot of progress together with our volunteers and donors. Besides the daily efforts of the “Children's Aid” program, we have been running public fundraisers to provide specialized nutrition and medical equipment for our little patients all over Russia, purchasing the essentials, and organizing parties at the pediatric palliative care department of the Morozov's Hospital and the Moscow Children's Hospice... But there was one story that stood out the most and touched us deeply, and we would like to share it with you.

 

Five years ago, we learned that there is a girl in Kazan called Elya who is crazy about Japan.

 She loves anime, where you can have superpowers, kiss under the sakura branches, cry an ocean of tears, scream so loud that your cry would be heard on the other side of Tokyo, and steal hearts. Thanks to Elina, we learned who Naruto is.

 Elya was 16 years old then; she weighed 16 kilos and was diagnosed with spinal muscular atrophy type 2. The body muscles weakened, and her back folded like a closed book, which caused terrible pain due to the ribs sticking into the internal organs.

 Secretly, while her mom didn't see, Elya opened a letter from a Moscow surgeon whom her mom asked to operate on her daughter. The doctor wrote that he was afraid that the fragile girl would die on the operating table.

 Elya wrote back to the doctor herself, saying that she'd rather die than continue living like a closed book.

 The surgery lasted for six hours. The surgery helped.

 Plates (spinal braces) were inserted into her back, and her ribs stopped squeezing her lungs.

 We bought a lung ventilator for Elya, which will support her breathing, and an electric wheelchair, which will help her move around independently.

 Now the Fund regularly sends supplies and specialized nutrition to Elina.

 But what can we do about her dream of seeing Japan?

 We thought through various options, but no matter which way we looked at it, the long flight would be torturous—even a strong girl like Elya was not ready to take this risk.

 Mt. Fujiyama is not in Kazan. And not in Moscow either. But sakura started blooming in Moscow in early May.

 That's how the big Moscow-Japanese trip started. The Fund’s friends helped us make this dream come true. There was sakura in the Botanical Garden, the “Japanese Beauty” exhibition in the Arts Center, dinner at a Japanese restaurant with a special menu by chef Hideki Kishimoto, a boat cruise, a visit to the observation deck on the 89th floor of the Moscow City tower, Japanese sweets, and a samurai cat which came to Russia from the Japanese city of Nara.

 In a thank-you note sent from Kazan upon their return, Elya's mom wrote: “We even saw real Japanese—at the hotel and at the Bonatical Garden :) Everything that has to do with Japan, we saw enough of it in Moscow. Really, it is a stunning city; we didn't want to leave.”

  

Thanks to the help of our volunteers and donors, we provide families of terminally ill children with the necessary equipment and supplies, and sometimes even make the kids’ dreams come true.

Thank you for being with us and for helping us give terminally ill children the gift of real childhood with all its joys, big emotions, and discoveries.

  

 Below is the data on allocated charitable expenditures this time:

 01.04.19 through 30.06.19

 Medical equipment and its service … $50849

 Equipment consumables…………..... $50593

 Special nutrition……………............... $76306

 Financial help to families …............... $10003

 Transport services …………….......... $7693

 Funeral services ……………............. $4122

 Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $61143

 Total …………….............…………….$260709

 

 

*We thank Veronica Demichelis for her generous help with rendering this text from Russian into English.

 

 

Apr 10, 2019

January-March

On March 17, amendments to the Federal Law on Fundamentals of Health Care for Citizens of the Russian Federation, which cover issues of palliative care, came into effect.

Earlier the federal law explained palliative care as a combination of medical interventions. However, at the end of life a person requires much more than just medical care. Palliative care is seen worldwide as medical and social care provided not just to the ill person but to his or her entire family. The new definition introduced into the law brought us as close as possible to such a systematic approach.

Now the law guarantees each patient the right not just to medical care, but to psychological assistance and involvement of social services in providing palliative care.

This means that our patients have got the right, at the end of life, to preserve their identity and their usual way of life even if the terminal illness took away their independence.

For us the adoption of this amendment means that patients under home care now have the right to receive complete palliative care, including medication and a social worker. In other words, a patient gets the right to stay with his or her family and receive all the necessary care at home.
This also means that patients in medical facilities now have the right to receive palliative care even if they can't express this wish themselves and sign a consent form. At the moment, it is enough that patients confirm their consent for care with a gesture. If they are unable to do even that, their doctor can gather a medical council and make a decision on this case.

 We have more fantastic news about the new opportunities for our patients! The Department of Respiratory Support, which opened at the Palliative Care Center a year ago, discharged the first patient with a lung ventilator, Pavel.

Why is this so important for us and sounds as if he were the first person who landed on the Moon?

The reason is that now people who can no longer breathe on their own and have to stay in intensive care for a long time due to a severe, progressive disease, these people can return home!

From the intensive care unit, patients are transferred to the Moscow Multidisciplinary Center for Palliative Care where their families are trained in providing proper care and controlling the device. Patients are not scared to go back home, because now their families are confident in using the device and have the support of the mobile service team which visits them regularly. How cool is it that everyone who needs constant respiratory support will get a chance to live at home!

 But even if a patient stays at the hospice clinic or at the clinic of the Palliative Care Center or its Department of Respiratory Support, family can visit round-the-clock. So, the time spent there will be interesting and eventful for patients and their relatives. For example, at the Moscow hospices, during the last three months, our volunteers not only organized numerous master classes, concerts, and “joy carts”, but also celebrated the traditional holidays: the Defender of the Fatherland Day when hospice patients and their families were congratulated on their courage and perseverance in the face of their illness; Maslenitsa, or Pancake Week, when hospice residents made pancakes, laughed at the jokes of Skomorokh the clown, and recited witty and mischievous verses to the volunteers; the International Women's Day when hospices smelled of fresh tulips and were full of smiles of their female residents and employees.

The memory that stands out the most is the one of Alexander Bembeyevich, a patient of the Degunino hospice. He asked his daughter to buy some tulips and gave a flower to each nurse, aide, and coordinator who entered his room.

 All of this is possible thanks to your regular support. Thank you so much for contributing to the work and development of our fund and, together with us, giving the gift of life to hospice patients—life for the rest of their life.

 

Our foundation has been spending the average of 121759$ to cover for the following needs of Moscow hospices:

 01.01.19 through 31.03.19

Meals – $1528

Financial support to hospice staff – $12164

Coordinators’ work – $78872

Other expenses - $29195

 

 *We thank Veronica Demichelis for her generous help with rendering this text from Russian into English.

 
WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.